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12 When your child isn’t going to get better
3. dealing with the hardest steps
Where will my child die?
You will need to think about where you would like your child to be cared for
towards the end of their life.
Most children and teenagers are happiest at home surrounded by familiar
faces and belongings. However, this may not feel right for you as a family, or it
may not be possible for your child to have the level of medical care that they
need at home.
You have choices so try to discuss the views and opinions of all the family
members. These choices may well alter with changes in your child’s health.
You can ask your treating team for advice about hospice care for children
and young people. If there are appropriate options in your local area, it may
be possible to arrange a visit to a hospice to help you decide if this would be a
good choice for you. Your hospice may also be able to accommodate short
family stays.
Brothers and sisters may appear to be managing well and to be carrying on
as normal. However, they could be feeling very vulnerable and just trying to
be brave and strong for you. They might need extra reassurance and comfort
and to feel that they understand things that are happening and are being
included in any decisions.
Children react in many different ways. You can discuss any concerns you
might have with the staff caring for you and your family. They will be happy to
listen to any worries and to offer you advice and support.
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